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Survivor and 19 years old!

October 30th, 2013 by Hunter

I was born 4 months premature and had NEC ( as well as a hole in my heart that they fixed, leaving me with a scar on my left shoulder blade). Of course when I was finally old enough to begin asking questions about the scar on my stomach, and a few scars near it, my mom explained it to me. I have been researching more into the topic, long term effects of NEC etc. But as I’ve grown up, I love my scars and am proud to wear them. Without them, I wouldn’t be alive today.

I am 19 years old now and will be going to Art school next year 🙂

Baby Penelope’s Survival Story

October 30th, 2013 by Aimee Alexander

Penelope’s start was a normal one. She arrived after a 39 week pregnancy and normal vaginal delivery. She was diagnosed with NEC at 10 hours old. They said it was due to an E. coli infection, but we still don’t know how it made it to her gut in such a short time frame. She never fed before diagnosis. Her symptoms were grunting and high glucose level (over 300, which is 3 times normal). The doctor suspected NEC, ordered an abdominal X-ray, and saw signs that most of her large intestine had pneumitosis (gas in the bowel walls) that is indicative of NEC. We were extremely fortunate the neonatologist recognized the signs so early.
Luckily, her bowels did not rupture, and she had surgery to remove the dead bowel tissue. The tissue was confined to half of her large intestine. She had a colostomy for about 6 weeks. Then, the surgeon went back in and rejoined the healthy parts. She has about 20% of her large intestine left. Her small intestine was not affected as far as we can tell.
Penelope was in the NICU for over 2 months, and those were the longest 2 months I’ve ever known. First, we worried her intestines would perforate. She was already in septic shock, so we didn’t know if she would make it. Then she made it through the surgeries. Next, our focus was on seeing if she can tolerate feedings being off the IV nutrition and being fed via an NG tube. She did. The next 5 months, we were on a mission to do all we could to help her get of the NG tube. She was gaining weight from the nutrition via NG tube, but she refused the bottle. Each bout of vomiting scared me into thinking there were more complications going on. When she got a GI bug, she had diarrhea and we had to be sure she wouldn’t get dehydrated. She was constantly taking Imodium and Nexium. By the time she was 7 months old, we weaned her off the NG tube, but she never would eat the volume of formula that the doctors said she should. We were lucky, once Penelope started solids and the liquid volume was less, she gained weight like a champ.
She is now 20 months old and is a survivor. She dances, tells me “no,” loves Elmo, and eats most anything you put before her. Only lactose and a handful of foods don’t agree with her. It has taken me this long to write her story. I owe the brave parents who shared their experiences with NEC to let us know we were not alone. The young adults who wrote their stories of having NEC gave us hope. We want Penelope’s story to give others hope. She’s your typical toddler who knows where her belly button is as well as her belly scar. She’s ticklish there, and we thank God every night that we get to tickle her.

Baby Elijah’s Story

July 29th, 2013 by Amy

It was a dream come true after 11 years trying to have a child, the news I was pregnant lifted me into the air and I dreamed about if it was a girl a boy..did he or she look like me or Rey…what name I would call him or her. I quickly made appointments to make sure the progress was going well. Everything did go well…to every appointment until 24 weeks into my pregnancy and my water broke. Sadly I thought, well maybe my baby is so eager to meet us he couldnt wait… I was rushed to Maine Medical in Portland where they tried to delay the arrival of my son by administering Mag. 3 days later I delivered him. A little boy we named Elijah. He was beautiful a full head of hair weighing 1 pound 12 ounces. Dr’s shared the statistics of premature babies at that gestational age but I told them he’ll be a fighter and would beat the odds against him. The first weeks were going ok, they tell you to get ready for the roller coaster and I thought it was odd as I always loved roller coasters. This was a ride I would not wish on anyone. He developed complications in his lungs that the dr’s stated he may just not be able to fight, oxygen up too 100%, then steriods. It was a tough decision but it was that or he just may not make it. 2 weeks laters our little fighter was beating the odds with his oxygen on 20%-30%..what a little fighter. With amazement from all our little son was now moved to the nippv. It was a first for this hospital. He was doing great..they started increasing his feeds and introduced fortifier for extra calories. Everything was going great.. he was starting to gain weight. In fact, I started to be able to hold my son. What an odd thing to wait for.. to HOLD YOUR child.. It comes without saying for most. The next day, I got the call no one wants to hear.. your son stomach has dicended and he is not acting himself. With panic we flew to the hospital. His stomach, bloated and bruised. With Xrays done, some dr.s thought it may not be NEC as xrays were not showing this. Antibotics were admin. TPN admin. no more feedings..It was a wait, the next day the bruising went away somewhat..then they decided to do an ultasound and when they had a team review it was confirmed it was in fact, NEC. My heart dropped because I spent hours reading about this online. I would read insipring stories of preemies overcoming this and be very hopeful that my son too would overcome. Sadly, he did not overcome this. The surgeon said if a little part of his intestine was infected he could surgically remove and possibly have a bag to get his secretions, etc. So, he told us to give him 1-2 hours. 45 min later I get the call to return to the hospital. We walked in to hear, Im sorry. The intestines are infected and we will need to remove your sons breathing tubes and say goodbye to him. I was/still am in disbelief. HOW did this happen? Was it me, the formula? what is going on. It breaks me to pieces that I no longer have my son Elijah. He was my everything and now, I feel I am left wondering WHY? I wish my sons outcome was different but sadly he must have been so special that he needed to go back to heaven.

Baby Jaiden’s Survival Story – Mom needs help

July 29th, 2013 by Lisa

my son Jaiden was born early at 29weeks gestation at the Melbourne Royal Women’s Hospital. He had a great start to life only needing cpap for the first night and then went on to breathing on his own from the next day on. He was so small (890gms) but just perfect. He required full tpn for the first couple of days then went to milk feeds. He came off the tpn as his feeds increased and 3 weeks later he was on 19ml per 2 hours and doing great. At 32 weeks we were transfered to a regional hospital (Ballarat Base) for Jaiden to see out his time to grow and get to term. He arrived at Ballarat showing signs of respiratory stress, bloods were taken but came back all clear. His condition was stable and there were no other signs he was sick. 4 days after arriving and within a few hours his vitals crashed and he was showing signs of having NEC – bowel loops full of air, distended belly, respiratory failure etc. Jaiden was rushed back to The Women’s hospital and hit with antibiotics, lines inserted everywhere and kept stable, things did not improved and he was shifted to The Royal Children’s Hospital. The series of events that followed were a living nightmare, my baby boy went from healthy to requiring abdominal surgery to remove bowel that had died due to NEC in a matter of 18 hours. Jaiden lost 15cm of the end of small intestine including IC Valve, his ascending colon and half the traverse colon in the first op and a illeostomy was bought out. He came out on oscillator ventilation and progressed quickly to standard full ventilation. He was left open with wound dressing covering the surgical site as there was more small intestine they were unsure about. 4 days later they went back in and removed a further 15cm of small intestine and a new illeostomy was bought out. Jaiden was closed up and on heavy sedation (modazolan), pain meds (morphine then fentanyl) and every other drug and medical requirement to keep him stable as he was very very sick and suffering renal failure and fighting for his life. It was constant blood transfusions, platelet transfusions, blood pressure meds, meds to make him pee,fluids to keep him hydrated etc etc. 2 weeks went by and he stayed “stably unwell” the docs called it, he just wasn’t getting over the ops, he now had full body sepsis and klebsiella infection and still struggling with renal failure. He was not responding to the normal mix of antibiotics and treatment and he developed abscess in his abdominal cavities. For the 3rd time the surgeons went in for a “wash out” and put in a drain. 4 days later there was still no improvement and op number 4 happened and this time Jaiden lost the other half of the traverse colon and all the descending colon due to abscesses on the colon sections. 2 drains were placed in the abdomen and new antibiotics were started which he seemed to respond to. On the Easter weekend he started to ooze pus from his incision and an ultrasound was done, they found more collections of fluid and abscesses in the abdomen. The surgeons did not want to go in again and instead unpicked a few stitches and let the pus ooze out of the incision site. He treatment was constant platelet transfusions, blood transfusions and antibiotics. Finally he started to win, the fluid collections reduced the abscesses started to clear up, time between transfusions became longer and he was getting better. They started to wean his sedation and pain meds and came off the ventilator 9 weeks after admission for NEC and he was put on high flow. At 10 weeks he was cleared of infection and a week later antibiotics stopped. Jaiden now has the battle of adapting to his new intestinal length. He hasn’t been able to absorb any milk so far and his stoma losses are high, he has been on trophic feeds of 1.5ml every hour to try to get his gut working. They have tried oral antibiotics for bacterial overgrowth with no success. Tomorrow they are going to start neocate to see if its an intolerance issue. I am scared for Jaiden’s future as I know the TPN causes liver disease and brittle bones and this is currently his only source of nutrition. I have not been able to get answers from the doctors if he will ever be able to drink milk or eventually eat normally or even how long he will stay in hospital, he cannot leave with an illeostomy as his losses are too high and surgeons say an early close will not help due to such little distal colon remaining, they have told me 6month minimum and longer if he’s going ok and not experiencing liver failure or repeated infection or sepsis. They say “time” will hopefully make things better. I haven’t been able to connect with anyone who has a child suffering the same intestinal loss as Jaiden to get any advise. He has 65cm small intestine, no IC Valve, and only the sigmoid colon and rectum remaining. Please if anyone has any advise I would be eternally grateful. What does the future hold for my beautiful baby boy :'(

Baby Samuel’s Story

July 29th, 2013 by Courtenay

I was 18 years old with my first little boy Samuel Ramon VanEpps. I had no contractions but I was spotting. So my boyfriend and I went to the hospital to check and see if everything was alright.
When we got to the hospital and I was checked, we found out I was in labor and was already 4 cm. They gave me meds to try to slow the labor. If they could have I would have been flown to U of M. But they could not stop the progress, so on 09/10/2007 I delivered my baby boy, although the doctor failed to tell us he was breech.
Other than being breech, he seemed healthy, he even cried when he was born. As scared as I was to be a first time mother at 18 years old and my baby being born at 28 weeks, he was here and he was alive. I got to kiss him on his forehead before they took him away. I thought everything was going to be okay since they took him by ambulance to U of M and didn’t rush him there by helicopter. I had to stay overnight but the night day I was on my way to be by my baby’s side.
Day after day, he seemed to be doing great! Two days after his birth, he was off the breathing machine and only had oxygen in his nose. With each day that passed the oxygen was turned down, he was doing better and better at breathing on his own! After a week, his father and I got to kangaroo care Samuel, Up to an hour and a half. He was now holding his temperature by himself for a short period of time. What a big man he was being!
Samuel even played “games” with the nurses and his visitors. If he knew that you were trying to take a picture of him with his eyes open, he would shut them and then peek to see if the person was still trying to take a picture, or if the nurse was still checking his vitals. Everything seemed so perfect and so promising.
September 22, 2007 he got moved into the room with other babies that have had surgery or were about to go home. Although he was far from coming home, he was doing extremely well; we left that night being proud parents of our little boy for doing so great.
September 23, 2007 was the worse day of our lives, at 9:00 am. The doctor from the U of M called and said that Samuel was having problems with his intestines and were going to try to cut small holes on each size of his belly to take the dead part of the intestine out, but just from the small incision, they could see all of his intestines were dying. So they put tubes in the incisions to relieve some pressure.
We ran to our son’s side as fast as we could, his left eye was open a little and you would tell he was mentally already gone, But refused to let me close his eye. His heart rate would drop and come back up but we were waiting for the rest of the family. Before the end, he was baptized and read his death rights. When the rest of the family got there, I was able to hold my baby one last time as he faded from this world, then his dad got to hold him and after about 10 minutes the line went flat and my angel left this world.
They took him from his dad to clean him up and said after he was cleaned up, we could hold him again. I didn’t think that I would be able to do it but I ended up holding him and had a hard time letting go.